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Thread: For Donna: Nick's Update

  1. #31
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    ((((((Donna)))))) ~

    There are probably dozens more truisms, but that's all my crowded brain could come up with at the moment. I'll check your blog for responses. Maybe we could create a caregiver's handbook! I'm sure there are hundreds of those already.

    Hope that all is well with Nick, Natalie, you, Jim, Daisy, and your family. How is Nick's feeding going? Is he able to eat orally?

    Sending healing prayers and all of our love ~

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  2. #32
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    He's still very nervous about eating orally and only just had a few teaspoons of ice cream. But I talk to him every day and encourage him. Tomorrow I have an appt at his place with the OT about his new air mattress that is already acting up. So we'll talk about food again and maybe I'll try to tempt him with some takeaway chicken and fries (his fave). Yes, we should write a handbook but as a start I think the living list of truths is great!!!! xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  3. #33
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    ((((((Donna)))))) ~

    How did the OT meeting go? What brand mattress does Nick have? Jon has Invacare Micro Aire 85, and his current mattress has bolsters on both sides, which helps to keep him centered in the bed. It may not be available in Canada, but if it is, we recommend it highly.

    Is Nick back up to his regular rate on his formula? Is he just full, or is he having an aversion to eating orally? I hope the chicken and fries work.

    As always, sending lots of love, hugs and prayers to you, Jim, Nick, Natalie and your beautiful family.

    Love & Light,



    Rose
    Mom to Jon, 49, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  4. #34
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    Hi dear Rose,
    I can't remember the mattress model but it has bolsters. The OT came today and made some changes to the settings. He also recommended that Nick sleep with the head of the bed raised to reduce obstructive apnea. We'll try it. There's a secondary CPR valve at the base of the mattress which was leaking and which the tech for the vendor duct taped. Given it's a new mattress, we are not very pleased! The good news is that Nick is eating! He ate some fettucini alfredo last night (few bites) and ice cream for dessert. I think he is over the fear. We are good and it was a good day! Thinking of you, Rose xox
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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